significant improvement has occurred in the quality of care provided at all levels.

Obviously this arrangement would permit the gathering of large amounts of data on the incidence of the various respiratory diseases and the effects of therapy on both disability and mortality. Such data could be channeled to the National Center for Chronic Diseases for collection, comprehensive evaluation and dissemination to the health field at large.

There is currently a shortage of trained professional personnel to provide leadership, instruction, and direction in the treatment of neonatal and chronic respiratory diseases. Adequate professional personnel do exist, however, to man a limited number of centers as demonstration sites. The establishment of centers will make these men available to a larger group of patients and will also facilitate the training of more specialists and the dissemination of knowledge to the practicing physicians of the area.

Centers will also provide at minimal cost the specialized facilities required for optimum diagnosis and treatment. The strategic location of such facilities in geographic centers of population would make them available to all the patients in the area.

In general, these pediatric pulmonary disease centers should be established in existing medical centers where the special interest and competence of personnel and the availability of facilities and equipment indicate potential for the development of effective and comprehensive teaching, research and care programs.

In fiscal year 1966 the Congress, recognizing the growing threat of chronic respiratory disease in the United States, appropriated $1 million for initiating a prevention and control program geared primarily to the chronic, nonspecific lung diseases, emphysema and chronic bronchitis, in adults. This program, I am told, is making a significant impact on the problems of detection and rehabilitation in adults. We wholeheartedly support this program but we know also that separate but parallel efforts must be made to prevent and control chronic pulmonary disease at an earlier age.

It is therefore our earnest recommendation that $750,000 be added to the appropriation for the National Center for Chronic Diseases in fiscal year 1968 to provide first year grants of approximately $150,000 for five pediatric pulmonary centers. The estimated annual operating budget for such centers after they achieve full staff and patient load will be approximately $250,000 per year.

During the initial development years, grants of about $150,000 will be adequate since it will take time to attract qualified trainees and a full patient load.

These funds should be made available on a competitive basis. A suitable merit review system for awarding grants or contracts should be established by the National Chronic Disease Center.

The need for this program is great if we are to reduce our infant mortality rate which is outrageously high. Chronic pulmonary disease which results in inability to breathe freely is one of the most tragic forms of disease. It is even more tragic because much of it could be prevented if the benefits of modern treatment were provided to the children who need it.

This is what this program would do and we urge you and your colleagues to vote the funds to get it underway.

Thank you very much.

(Detailed data on centers follow :)

PERSONNEL COMPLEMENT FOR PEDIATRIC PULMONARY CENTER

1) A Center Director who would, as a specialist in the field of respiratory diseases in children, direct and coordinate the teaching, clinical research and care functions of the Center.

2) A training program director who would assume responsibility for organizing the formal aspects of the training program for fellows, practicing physicians, nurses, physical therapists, inhalation therapists and social workers and who would assist the Center Director in providing patient care.

3) A neonatal respiratory disease specialist who would direct and coordinate all aspects of the training, research and care programs for premature and newborn infants with respiratory problems.

4) A pulmonary physiologist who would supervise the blood gas and pulmonary function laboratories in providing routine evaluations and in carrying out clinical research.

5) A part-time clinical pathologist with special training in the fields of biochemistry and bacteriology to provide specialized diagnostic and evaluation tests and cultures.

6) Allied specialists in the areas of pediatric radiology, cardiology, allergy, thoracic surgery, otolaryngology and psychiatry to provide consultation clinical services and to assist in the training program.

7) Specially trained nurses, physical therapists and inhalation therapists are needed to supervise respiratory care in the clinic and hospital, to assist in the training program and to provide patient and parent instruction in the techniques of home therapy.

8) Pulmonary function, bacteriology and special test technicians are needed to man the special laboratories associated with the Center.

9) Medical and psychiatric social workers are needed to handle patient financial, social and psychiatric problems.

10) A statistician should be provided to collect, collate and analyze all data accumulated by the Center on the incidence of respiratory disease, the effectiveness of various therapeutic measures and programs, and on disability, morbidity and mortality.

11) Finally, secretarial help is essential to handle the administration associated with the training programs and the correspondence between the Center and referring physicians.

Mr. Chairman, at the table with me here is Dr. LeRoy Matthews of Cleveland, Ohio. Dr. Matthews has had unique experience as director of a Center where pulmonary diseases of children are treated. I think it would be helpful to you and to the committee if he gave you a few examples of what can be done for children in such a center. He has some photos which tell the story very graphically.

78-242-67-pt. 6-20

Mr. FLOOD. Dr. Matthews.

STATEMENT OF DR. LEROY MATTHEWS

(Biographical sketch of Dr. Matthews follows:)

LEROY W. MATTHEWS, M.D.

Born: August 20, 1925 in St. Cloud, Minnesota.

Education:

St. John's University, Collegeville, Minnesota, 1943.

John Carroll University, Cleveland, Ohio, 1943-44.

Harvard Medical School, Boston, Massachusetts, 1945-49 (M.D.).

Post-Graduate Training:

University Hospitals of Cleveland, 1949-50 (Intern).

Babies and Children's Division, Cleveland, Ohio, 1950-52 (Resident). Fellowships:

Research Fellow in Pediatrics, Western Reserve University, School of Medicine, 1950-52.

Academic Appointments:

Instructor in Pediatrics, Western Reserve University, School of Medicine, 1954-55.

Senior Instructor in Pediatrics, Western Reserve University School of Medicine, 1955-57.

Assistant Professor of Pediatrics, 1957–1967.

Professor of Pediatrics and Assistant Director of Babies and Children's Hospital, 1967-.

Military Service:

United States Navy, enlisted, 1944-45.

United States Navy, medical officer, 1952–54.

Society Membership:

Alpha Omega Alpha-Harvard Chapter, 1948-present.

Academy of Medicine, Cleveland, Ohio, 1954-present.

Ohio State Medical Society, 1954-present.

Society for Pediatric Research, 1957-present.

Midwest Society for Pediatric Research, 1958-present.

Northern Ohio Pediatric Society, 1954-present.

National Cystic Fibrosis Research Foundation, 1958-present.

Offices held:

Secretary Treasurer-Northern Ohio Pediatric Society; 1960-61.

Secretary Treasurer-Nothern Ohio Pediatric Society, 1960-61.

Council Member-Midwest Society for Pediatric Research, 1960–63.

Member, General Medical and Scientific Advisory Council, National Cystic Fibrosis Research Foundation, 1960-67.

Vice-Chairman, General Medical and Scientific Advisory Council, N.C.F.R.F., 1967-.

Honors: Alpha Omega Alpha-Harvard, 1948.

Dr. MATTHEWS. Mr. Chairman and gentleman, I am Dr. LeRoy Matthews, professor of pediatrics at Western Reserve University and director of a center like the ones in the program recommended by Dr. Barbero. I would like to illustrate what such a center can accomplish and to show you some of the special facilities and equipment required.

The life table graph on page 1 was prepared by Dr. Warren Warwick, chairman of the National Cystic Fibrosis Research Foundation Medical Care Committee to show the increase in the life span of patients with cystic fibrosis that has resulted from improvement in methods of care. Lines A, B, C, D, and E show survival curves of patients with cystic fibrosis diagnosed between 1938 and 1950 when no specific therapy was available. The median age at death was 8 months and 70 percent died before 1 year of age. During the next decade the development of methods for treating the digestive defect

and antibiotics for treating and pulminary infection resulted in significant improvement as shown in curves F and G. The median age at death was extended to 3 years, the number dying before 1 year of age reduced to 36 percent and the number surviving beyond 10 years increased to 22 percent.

In 1964 the National Cystic Fibrosis Research Foundation studied the mortality rate of 3,131 patients who were receiving care in university affiliated hospitals where special cystic fibrosis projects had been established and where as a result, more knowledgeable physicians, nurses, and other personnel and better facilities existed. These institutions, in general, used inhalation therapy, physical therapy, antibiotics and nutritional therapy after the respiratory disease had developed. The marked improvement in survival is shown in line H. The average age at death was extended to 12 years and survival to 20 years increased to 32 percent.

Data on the 349 patients with cystic fibrosis cared for in the Respiratory Disease Center at Babies and Children's Hospital in Cleveland from July 1, 1957, through December 31, 1965, is shown in curve I. Only 25 deaths occurred over a total of 1,188 years of followup. The most marked improvement is seen during the first 7 years of life in the children diagnosed early and treated prophylactically. No deaths due to respiratory disease have occurred in the prophylactically treated group. Since a prophylactic therapy program was only available for 7 years most of the children over 7 years of age had significant lung disease before treatment was initiated and as a result show a higher mortality rate with increasing age. Despite this fact the median age at death is increased to 21 years.

To further illustrate the benefits of respiratory disease center care I have prepared some before and after treatment pictures.

Debbie Reynolds was a 10-month-old infant who came to us weighing 10 pounds 3 ounces and in critical condition. She had been ill with chronic respiratory disease for 6 months and had failed to respond to routine treatment in her hometown. Despite the duration and progression of her illness she had not irreversibly damaged her lung and responded well to an experimental comprehensive treatment program. The second picture shows her 5 years later. She is now 9 years old and continues to have an excellent prognosis.

The next set of pictures show another infant who was born with intestinal obstruction due to cystic fibrosis. She developed severe pulmonary disease at 2 weeks of age and failed to respond to routine therapy in another university hospital. She came to us at 11 months of age weighing 5 pounds, 6 ounces. The second picture shows her 1 year after comprehensive therapy was initiated.

The next page shows pictures of two older girls with severe pulmonary involvement before and 1 year after optimum therapy was initiated. The improvement is obvious.

These are just a few examples of the results respiratory disease centers can achieve. They are dramatic results but we are more impressed by the prevention of respiratory disease illustrated in the next set of pictures. These identical twins were born to a family that had, in the past, lost two infants to the respiratory complications of cystic fibrosis. Because of the family history the twins were diagnosed at 2 weeks of age and placed on a prophylactic treatment pro